Sunday, 13 April 2014

Last year I had a bad experience in a group which was meant to be for Autistic people but oddly there was an NT person running it. This of course raised a red flag for me. I now have hindsight about the situation which happened in this group and realise now why the person involved reacted the way they did. This was the comment I posted in the group. I can clearly see that I too over-reacted to the situation due to what was going on in my life at the time. However, my thoughts on censorship are still valid. 'I have decided to leave this group because I do not feel safe or welcome here. I asked a genuine question regarding something and my comment was deleted. I do not like the fact there is censorship here because I personally believe that censorship makes it extremely difficult for Autistic people to understand the world and how it works. If we don't ask questions, how will we ever know or understand why things are the way they are. There is no harm in asking genuine honest questions which I did and my comment was deleted. I no longer feel safe here. I am sorry it has come to this.'

I do not understand how the world works so I need to ask questions in order to learn and understand how it works. Not allowing me a safe space to learn how the world works is not conducive to learning.

I have a thirst for knowledge and desire to grow to be a better person. If I ask you about something, please do not get offended. I am genuinely confused and desperately need to understand. Having my questions silenced or deleted is censorship and it inhibits my understanding and learning of the world. That is not ok with me. Listen to me and respect me. Learn my language. I have a different way of looking at the world and speak a different language. Please don't place your assumptions and ideas of language onto me. It inhibits my voice and invalidates my experience.

I'm incredibly grateful for these books as they help me script and figure out how to cope with different parenting situations. They are simple, short and easy to read. They help me to find the words to say and how to support my son. They help my son understand what to do and how to behave. I want to collect the sets. They are very helpful for my son and I.My son and I have had many beautiful, calming moments rocking on the rocking chair reading 'Calm-down time.' I have found it incredibly helpful to have this short, simple book handy for when neither of us are coping very well. We take a quiet moment to read this book and afterwards we are both so much calmer and happier.

My son has trouble with regulating his little body. He gets excited, angry or sad. He feels it so intensely. He feels the need to bite us when he is emotionally overloaded. I relate to his intense emotions as I struggle with the same intense feelings of needing to bite, lash out or yell/scream when emotionally overloaded. This book we have found really helpful in helping Possum re-direct his need to bite. I am trying other things also.

I would really like to get the 'When I'm feeling...' box-set. It would be a fantastic parenting tool. It would help me to learn more about emotional regulation and apply it to myself. I will be saving up for it as it is expensive.

Monday, 7 April 2014

Lately I've been thinking a lot about identity in terms of who I am and how my diagnosis changed me internally. How it changed how I viewed myself. Being autistic is an identity to me. It explains so much about me. I cannot be separated from 'my autism'. Autism colours every single experience I have. It did before I was diagnosed. I just did not know about it or understand why I felt, acted and thought so differently to most of other people I met and interacted with. I felt like an alien from age 6. My diagnosis changed and saved my life. I do not suffer from autism either. I live it. It's my life. I'm tired of hearing people who say it has to be person first language. That it must be person with autism. I'm not with autism. It pervades my being. I am Autistic. Autism is not a separate part of me that I carry around and put on when I feel like it. Autism is not something I wear or choose to put on. It's always there colouring my world, thoughts and feelings. I actually really like being Autistic, most of the time.

I find it very threatening when people try to tell me to be more normal or tell me to fix myself or that autism can be cured. I have spent years hating myself for not being normal enough. Hating myself for not being able to fix myself. For trying and constantly failing to fix myself so I feel less, cry less, connect more, understand socially, talk less, talk more, to care less, to not be so anxious, to go with the flow. Every single time I tried to do those things I could maintain it for a short time but then it would exhaust me. I would perseverate over and over trying to figure out why I could not be like that all the time. I wanted to be that funny, social person, have-it-altogether person. I couldn't maintain being that way. I didn't know who I was a lot of the time. I would try out different persona's, put them on like masks, mimicking others, hoping one would fit, hoping one would be the 'real me'. People talked about finding themselves, how great that was, how happy they were now that they had found who they really were. I unfortunately kept losing myself or thinking I did.

I find it very triggering and upsetting when others tell me to be more normal, to fix myself or that there is a cure for Autism. I have spent so many years trying to be more normal, to fix myself and failing incredibly that I find it painful and upsetting when others around me have this attitude that I can just fix being Autistic. I cannot, I have tried and failed over and over. In fact trying to be more normal became an obsession for me, a very unhealthy obsession. Thankfully my new understanding of myself stopped my obsession.I have decided I do not need that attitude in my life, so I am selective about who I interact with. This is a healthy boundary for me. I am too fragile and vulnerable right now to cope with others trying to project that onto me.

It was not until I started learning about ASC, females and how it tends to present differently (Aspergirls by Rudy Simone) that I began the turbulent journey of self-discovery, acceptance and who I really was. I believe the new knowledge about being Autistic saved my life as I was suicidal and hated my life. I did not know how to keep living the way I was. I felt so fractured after becoming a Mother. I could not maintain the other selves. I felt so lost, alone and broken. Reading Aspergirls was like the light at the end of a very long, dark tunnel. I finally had answers and a small beacon of hope. That hope began to grow and grow. I finally had hope for a better life and a way of living that suited me.

It's been very turbulent since my diagnosis. I was already very overwhelmed and was trying to do too much. My diagnosis was just one more huge overwhelming thing added to a big pile of things that were already too much. I fell apart. I regressed. I cocooned myself away from the world. I hid from the world. The world had suddenly become too bright, noisy and overwhelming for me. It was too hard for me to try to stay connected with people in person. I discovered the joy of online socialising. I discovered AS women’s groups. I interacted with so many women who were similar to me. It was amazing! I have learnt and am still learning so much from these amazing women, many of who are still my friends today. We have never met but we connect and share so many similarities. I read obsessively about autism and blogs by autistic bloggers. I processed. I accepted parts of myself I had tried to keep hidden as I thought that made me evil and bad (thanks to religion). I went through numerous overwhelming emotions. I grieved for the little misunderstood girl and teenager who did not get the support she needed. I felt joy, relief, sadness, and anger many, many times about so many different memories from my past. I felt those same emotions in terms of my future and who I really was. It really was very turbulent and difficult for me. I began take off layers and layers of personas and walls of protection I had put around myself, strip them away to examine my true self. I found this very healing. I am still doing this process of examining myself but it has settled down.

Things have settled down for me internally. I don’t feel the raging storm of emotions, memories. The intense need to know every single tiny thing about Autism and what being Autistic means to other Autistic people. I still find it fascinating and am obsessed but I don’t feel this intense need to know it all in order to understand how I work. I finally know myself and how I work. I am kinder to myself, I don’t hate myself and I don’t feel suicidal. I have suicidal thoughts occasionally but I let them pass through my mind like a train on a journey. I don’t need to accept or acknowledge them.

When I say I am Autistic, please don’t correct me. I finally have an identity which explains an incredible amount about me, who I am and how I work. I like who who I am, finally. I like how I do things, how I see the world, how I communicate and interact with others. Understanding myself has given me the power to work with myself rather than against. This is indeed a powerful thing for me.

Tuesday, 1 April 2014

On March 29, 2014 I, and two other lovely Aspie women (A and W) friends drove from the Sunshine Coast down to Manly, Brisbane. We drove into a drive way with a quaint looking building. It was held at the Presentation Spirituality Centre. The building had a lot of history to it which really appealed to me. I like buildings with history, they have a story to tell.

I wore my ‘Ask me about neurodiversity, it’s my special interest’ tshirt because I thought it was appropriate for the day. It turned out to be a great conversation starter. I am glad I wore it.We got a photo of the three of us in front of the building before we went in.

We went into the presentation room and met R (the presenter), her husband and son. We were the first to arrive at just on 9am. I was so excited!!

We shook hands with R and her husband and did the general introductions and greetings.

I was excitedly nervous, like so excited that I could barely contain myself. I felt flappy but did not flap. I wanted to but didn’t know how it would be perceived by others. Ha ha! The irony. I realise I self-censor my stims a lot and that I do not have quiet hands, I have loud hands. I was very much looking forward to meeting the other Asperwomen who were coming along and interacting with them.

One by one the other women arrived. A, W and myself chatting happily amongst ourselves in the very comfortable padded chairs with armrests! They were awesome chairs. I took note of what each woman looked like and what they were wearing. I noted we all looked different but we shared a common neurology. I knew overall looks would not even matter at all and they didn’t. I of course cannot help but notice people’s appearances and clothes but do not judge. It’s a pattern noticing exercise for me, really. Nothing more.

We were all a bit shy around each other at first and did not get a chance to really talk much as R wanted to start the program. So we focused on the introduction which was several minutes. Then came the morning tea break and that was when I started talking to some of the other women. I was so excited I felt like I was going to explode. I could barely contain myself. I felt like an excited puppy and it showed!! Ha ha!

I met a woman at the morning tea break who was wearing a Neurodiversity tshirt which is from last years ASAN (Autistic self-advocacy society) for Autism Acceptance Month (April, 2013). We saw each other’s shirts and instantly connected in conversation. It was awesome. We realised we both liked Brene Brown which was another connection. Very cool. We were both really excited about that!

R called us back to continue the rest of the program. She told us about a woman called Caryll Houselander, who upon reading about her life and writings, Rachael had come to the conclusion that she was an undiagnosed historical Asperwoman. We sat enthralled listening to Caryl’s story and how she struggled to fit in and knew from a young age that she was different. Rachael shared some of Caryl’s quotes which were truly profound and insightful to the intense internal struggle that Caryl faced everyday. She overcame those struggles and forced herself to interact with people. From Wikipedia ‘During the Second World War, doctors began sending patients to Houselander for counselling and therapy. Even though she lacked formal education in this area, she seemed to have a natural empathy for people in mental anguish and the talent for helping them to rebuild their world. A visitor once found her alone on the floor, apparently in great pain, which she attributed to her willingness to take on herself a great trial and temptation that was overwhelming another person.’ Rachael shared how amazing it was that she had worked hard to work with people and help them even though she had no formal training. She was well known in her area as having a gift of being able to help others and help them re-build their lives.

R handed out questions on little pieces of cardboard with different quotes that Caryl had written about different aspects of her life. We separated into groups of three to discuss the question and share our answers. I did not go with the women who I came with. I wanted to meet and interact with some of the other women. I went with two other women who were sitting near me. K and L. Our question was ‘How has your difference brought joy to others?’

Two of us shared our experiences with how validating our diagnosis was and what that meant. It was amazing to hear a similar story from a another Aspie woman of how amazing diagnosis was for us.

I shared about how I advocate openly on FB and in everyday life and have a good little community of people following me online, who find my insights fascinating and helpful. I shared that I had been told a few times by online Aspie friends and even one NT friend how much they appreciated what I do by sharing my insights.

The other two in our little group seemed quite interested in my little story. I over-shared and talked too long so one woman missed out on sharing her story, unfortunately. I felt a bit bad about that. I struggle to know when to stop and how to summarise.

We got an opportunity to share with the rest of the group what each little group had discovered in our discussions. It was quite insightful and interesting hearing each group share a little of their insights. I cannot remember everything that was shared but I know I found it insightful and helpful to hear from other Asperwomen and their stories.

I chose not to share my story and what our group had shared as I felt I had already talked a bit too much so I did not, even though I wanted to. I never know if I am taking over and sharing too much, so chose not to share.

R talked about mindfulness and meditation - benefits. We did three short mindfulness and meditation exercises which were 3, 5 and 3 minutes each. Then we gave her feedback. I learnt a new technique for meditation - repeating a short phrase, in this case ‘All shall be well’ over and over to myself and focusing on my breath. I found speaking the phrase quietly to myself helped me focus and get into a meditative state easier. I have had previous experience with mindfulness and meditation which made it easier for me to do.

Then it was time for lunch. I started chatting to a few of the other women there. It was so awesome to chat with women who have been through similar struggles. I got so caught up talking that I almost forgot to eat. It was very exciting for me. I have never been in a room of so many Asperwomen at the same time. I clicked with all the women I chatted to. It was such a wonderful experience for me. I have never experienced that before.

I wanted to chat to EVERYONE! I was intensely excited and happy to be in a roomful of Asperwomen. I was a bit shy at first, but soon got over that. Unfortunately I did not get a chance to chat to all of the amazing women there. I really wanted to but it was just too hard to get around to talk to everyone. There was just not enough time and I did not have energy to do so. At the end someone suggested we all connect online and start a google or yahoo group. Which we are going to do. I am looking forward to this.

After lots of talking (which was tiring, but good), it was time for the afternoon session. The afternoon session consisted of R sharing a diagram about the different layers of who we are and how our true self is hidden under layers of other things that get in the way of learning who we are. It was interesting and helpful. She talked about how we need to uncover those layers through meditation and discover our true self.

Then we had a longer meditation session. This one went for 10 minutes where we once again repeated ‘All shall be well’ over and over, focusing on breathing. It was very relaxing, calming and centring for me. I did not think I would be able to do 10 minutes of meditation as I do struggle to sit still at times (especially when I am excited) but I managed it quite well.

We did this candle lighting ceremony to symbolise our sisterhood and the beautiful day we had had together. Each of us lit a small tealight candle using a long thin candle from a bigger candle. it was a beautiful set up with a rainbow chiffon scarf draped over a little table. It was so relaxing to watch the gorgeous scarf blowing in the refreshing ocean breeze. It was a visual stim for me. I took photos and a short video of the ceremony. beautiful calming music. It was to symbolise our sisterhood and how our neurology connected and united us. A very beautiful ceremony.

Then we took a group photo so we can remember each other and the day. Someone asked if everyone was ok to keep in contact with each other. R made an announcement to see if everyone was ok with connecting in some way via email or some type of group. Yes! They were! I am looking forward to connecting with the other amazing women that were there.

Afterwards I chatted to a number of lovely women - K, R, M, C, L, F and others. I have unfortunately forgotten some of their names but it was amazing being able to chat to each one. We added each other on FB and exchanged email addresses. I am looking forward to connecting and chatting more with these amazing women. I feel so blessed to able to have an opportunity to meet so many Asperwomen all at once in real life, not just online. I was almost the last to leave, I was having such a great time. I was sad that it had ended but all good things do have to come to an end.

It was funny, afterwards on the trip home. A and W told me about how I politely pushed R out of the way to get a photo of the lit candles. Apparently R was adjusting herself getting ready for a photo which I did not notice at all. I was so hyper-focused on taking a photos of the candles that I did not notice R getting ready for a photo. Ha ha! I was a little embarrassed and felt like I had been rude (definitely did not mean to be), but soon realised that we are all Aspie so would understand our social stuff ups. I definitely cringed inwardly a little when A and W told me what I did. They were laughing with me because really it is funny!

R shared a little of her own struggles of being an Asperwoman which I very much appreciated. She explained that years ago she would have freaked out over the slide show and remote not working (it had a few moments of not working) but now she is able to keep calm and move forward. I would have loved to hear a bit more about her own journey and understanding of self. Perhaps another time?

I also would have liked to have more group talking time to share our struggles, successes and really connect as a group of Asperwoman. I strongly believe that Asperwoman can and should mentor each other as we can all learn off each other. Perhaps next time?

For the women who attended the AS retreat and who are reading this, if you wish to contact me (so we can create some form of online group) please email me here. Looking forward to re-connecting with you all again.